My cancer battles have taugh
Bestselling author SOPHIE SABBAGE won worldwide praise for her first book, which told how she fought 27 brain tumours. Now she has won through again, defying incredible odds ‘One minute I was researching trials for my cancer mutation and the next I was pl
THIS time last year I had lost my balance, literally. I was walking like a drunk, tipping from side to side and falling over if I turned my head too quickly. My eyesight was off-beam too, like headlights pointing at the kerb instead of the road.
I got dizzy turning over in bed at night and vomited when I sat up in the morning. At times I mixed up words when speaking. Most days I had headaches and I couldn’t walk down the stairs without assistance.
My husband John gave me his arm to lean on when I pottered around the garden each day. I became increasingly dependent on him. I couldn’t tuck my daughter Gabriella into bed because bending over made the room spin and I couldn’t walk through the fields to see the horses that always greeted me as a friend. Every day I lost a bit more control over my body.
All these symptoms began in January last year because my brain tumours had returned.
I had first been diagnosed with incurable lung cancer in October 2014 at the age of 48. After effective treatment I stabilised for 18 months (though I never went into remission), then 27 brain tumours appeared, some tiny.
I had a good run at “normality” after Gamma Knife radiation successfully cleared them. For nine months I strode out into the world as a healthy human being. My first book, The Cancer Whisperer, had come out in paperback and I travelled around the UK giving talks to cancer patients and basking in this surprising new opportunity to make a difference.
I’d spent much of the winter of 2016 on an ice rink with Gabriella, now eight, who makes all the bitter in my life sweet. She is so much what I longed to be at her age: all muscle, agility and exploding into each moment.
As I leaned on my walking stick a few months later, I wondered if I would ever skate with her again. My situation seemed so immutable. The symptoms were worsening and it became hard to feel hope.
“Lifeshocks” is a term I’ve long been using for those out-of-the-blue moments that surprise or blindside us. They often come in waves, one after another, lapping on the shore at our ankles and slowly building in size until we get soaked.
That is how it went when learning about my brain. First, I got a phone message from my neuro-oncologist telling me my latest scan was “fine” and to carry on as normal. That word alone was a clue. “Fine” told me almost nothing. That’s what we say when someone asks us what we are feeling and either we don’t know the answer or don’t want to be honest. It’s a barren word. But on this occasion I took it at face value and didn’t chase the details.
Two months later, he called me into his office and told me things weren’t so “fine” after all. He was soon explaining a few spots on my scan that looked like scarring. “The problem,” he said, pointing at a particular blurry zone near the brain surface, “is this lesion here. It’s new.” Another wave splashed against my ankles. I leaned in to look closely at a small, white circle with a flat side where it butted up against the inside edge of my brain’s lining. “It is in the meninges,” he said, “which means we can’t do Gamma Knife again. We need to do whole brain radiation instead.” This time I got drenched.
IKNEW about leptomeningeal disease, a rare complication whereby tumour cells gain access to the cerebrospinal fluid pathways, slowly depriving the brain of oxygen and neurological functioning. I was blindsided, not just by this information but by the way he had let me believe I was okay when I wasn’t.
This is what lifeshocks do: they shatter illusions. Mostly I am ready for the shattering but even as the glass shards spread out at my feet, I tried to cling to this illusion by asking for another scan. I needed to keep believing I was “fine”. This is how we try to protect ourselves from reality: by pretending what’s happening isn’t happening even when it is slapping us in the face.
Just 10 days later the neurooncologist scanned my brain again with a much finer-cut machine and, sure enough, there were multiple lesions in the tissue and lining. The lifeshock that struck deepest was seeing three streaks of cancer spreading out in the fluid pathways at the back of my brain.
This time it was undeniable. I had leptomeningeal disease.
I’d had no active tumours from the neck down for more than three years as treatment had blitzed them and kept them at bay. But the challenge this time was the bloodbrain barrier; a security system which few drugs can penetrate, making the brain especially vulnerable in a situation like mine.
In those off-balance months I did all I could to find a viable alternative to radiating my brain indiscriminately. Some possibilities surfaced but they were long shots rather than certainties. I hung in for nine months as my symptoms became so debilitating that all I could really do was sit upright in bed and write my latest book.
That the summer I was walking a tightrope between what I had the power to affect and what I was